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This is the second part of a three-part series which deals with common concerns on returning to work after a cancer diagnosis.

In Part 1 of this series, I shared some tips with you on how to prepare for your re-entry into the workplace. In this article we will look at practical ways to handle issues such as fatigue and concentration, managing your workload, and dealing with stress.

Let’s start with some tips on coping with fatigue as it’s probably the biggest challenge you will face, regardless of whether you are working during treatment or returning to work after treatment has ended.

Coping With Cancer-Related Fatigue

Cancer-related fatigue (CRF) is increasingly recognized as one of the most common and distressing side effects of cancer and its treatments. It has been estimated that from one quarter to nearly all cancer patients experience CRF during and after treatment. Although things generally improves after therapy is completed, some level of fatigue may persist for months, or even years, following treatment.

Commenting on the impact of CRF on her own work, Kate Bowles, who was diagnosed with breast cancer in 2013, says, “The main advice I give is that chemo related fatigue is real and lasting. And also that your priorities change, often in very empowering ways. I am very calm in my job, because I really know now that it’s just a job.”

A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you. Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue.

Making some adjustments to your everyday routines can also help you cope with CRF.

Here are three ways to do this.

1. Make deposits in your ‘energy bank’

You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

2. Plan your day

Planning is key when you have fatigue. Write a ‘To Do’ list each evening so you can prioritize the things you need to do at work the next day.

3. Do some regular light exercise

Try to get out in the fresh air for a walk at lunchtime. Although exercising may be the last thing you feel like doing when you’re tired, if you don’t exercise, you’re more likely to experience fatigue.

I also recommend you download a free app called Untire, which contains a program that will help you track and improve your energy levels. The app uses theories and techniques from scientifically proven cognitive behavior therapy, mindfulness-based cognitive therapy, positive psychology and physical exercise interventions.

Time Management

Managing your time at work is all about learning to work smarter, not harder. It’s not about packing more tasks into your day, but about streamlining how you go about your work and prioritizing key tasks.

Here are seven tips to develop better time management skills.

1. Track your time and eliminate the non-essential

First things first. If you’re going to manage your time better, you need to figure out where you spend your time. Use a tool like RescueTime to track your activities for a week. This will help you determine how much you can realistically accomplish in a day, identify the time of day when you are most productive, and uncover daily timesucks, such as reading emails (unsubscribe from those e-mail lists you no longer need). When we can clearly identify our daily time sinks and remove them, we become more focused and productive.

2. Do the most important thing first

Mark Twain once said, “If it’s your job to eat a frog, it’s best to do it first thing in the morning. And if it’s your job to eat two frogs, it’s best to eat the biggest one first.” The point that Twain was making is that you should take care of your biggest and most-challenging tasks first thing in the morning.

Each day, identify the one or two tasks that are the most important to complete, and get started right away on them. If a task is too big to complete in one day, divide it into smaller tasks to be spread out over several days. When you have accomplished a task, mark it off your list with a pen. This provides a psychological boost as it gives you visual confirmation that you are getting somewhere.

3. Batch related tasks

Batching refers to the process of using blocks of time for specific repetitive tasks. Different tasks demand different types of thinking, so save yourself time and mental energy by focusing on one type of task before moving on to the next.

4. Focus on one task at a time

Finding it hard to concentrate is a common effect of having had cancer. To combat this, focus on one task at a time instead of multi-tasking. Research tells us it can take up to 30 minutes to return your attention to whatever you were doing before an interruption. Put your phone away, close your email applications and any unnecessary browser windows on your computer. Concentrate fully on the one task you need to complete.

5. Take regular breaks

Allow yourself down-time between tasks. Break for lunch and take additional short breaks throughout the day. Maintain your energy reserves with nutritious snack breaks. Pack nuts, fresh fruits and veggies, hummus, or low-fat cheese to take to work with you.

6. Set time limits for tasks

Give yourself a certain time by which you will complete a task. For instance, reading and answering email can consume your whole day if you let it. Instead, set a limit of one hour a day for this task and stick to it. The easiest way to do this is to assign a solid block of time to this task rather than answering email on demand.

7. Let go of perfectionism

Stop trying to be perfect. When you’re a perfectionist, nothing will ever be good enough. That means you’ll stick with a task long past the deadline. You’ll say yes to too many things and take on too much in an effort to prove to yourself, and others, that nothing has changed since your cancer diagnosis.

Sometimes you need to realize that good enough is sufficient and when you reach that point, then simply stop. This is not an excuse to do a poor job, but it is intended to give you permission to do a good job and then leave it there. Don’t waste precious energy and time polishing and perfecting something past that point.

Managing Stress

It’s normal to feel some stress on returning to work, so it makes sense to plan ahead for how to deal with stressful situations. Here are some tips to help you.

1. Identify your body’s stress response

How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your own individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.

2. Slow down and pay attention to your breathing

When stress hits, everything speeds up. Our thoughts race, our heart pounds and our breathing increases. This can make it difficult to think rationally. Consciously slow down your breathing. When we are stressed we tend to breathe more shallowly. When you feel stressed, practice taking some slow deep abdominal breaths. Deep abdominal breathing slows the heart down, lowers blood pressure and helps us feel calmer.

3. Come back to your senses

One of the best ways to stop getting lost in your thoughts is to come to your senses and ground yourself in the present moment. A simple exercise is to notice five things around you. Practice this periodically throughout the day, especially at those times you find yourself getting caught up in your thoughts and feelings.

Look around and notice five things that you can see;
Listen carefully and notice five things that you can hear;
Notice five things that you can feel in contact with your body (for example, your feet upon the floor, your back against the chair);
Finally, do all of the above simultaneously.

4. Take Some Exercise

Physical activity is one of the simplest and most effective ways to reduce stress and anxiety – providing a natural outlet for your body when you are exposed to too much adrenaline.

Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.

Go for a walk, head to the gym or find a lunch-time yoga class. Throughout the day take short breaks to stretch or do simple exercises at your desk.

Wrapping Up

Handling your re-entry to the workplace after a cancer diagnosis is all about organizing your time better, prioritizing your workload, establishing boundaries and becoming more comfortable with saying no to unreasonable demands.

Above all, it’s about making your health your top priority. Get adequate sleep, eat healthily, take some exercise and incorporate stress-management techniques into your daily routines.

I know from personal experience it isn’t always quite as straightforward as I have laid things out here. There will be many ups and downs. Deborah Bowman, a Professor of Medical Ethics, who was diagnosed with cancer in 2017, urges self-kindness and patience. “Don’t be afraid to say if it becomes unexpectedly (or expectedly!) difficult,” she says, “be kind to yourself and allow others to be kind to you too. Accept it may be up and down rather than a straightforward trajectory. Celebrate your good moments and forgive yourself the harder moments.”

Next month in Part 3 of this Returning To Work series, we will take a look at the opportunities and challenges of finding a new job after cancer. Until then, if you have any tips to share with readers about how you coped on returning to work, please share them in the comments below.

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

Self-Care During Illness:  Tips for Cancer Survivors

November 27, 2018/in AML Blog WN, AML What's Next, Bladder Cancer, Bladder Cancer What's Next, BLC Blog WN, CLL Blog WN, CLL What's Next, FL Blog WN, LC Blog WN, LC Whats Next, MM Blog WN, MM Whats Next, MPN Blog WN, MPN Whats Next, NHL Blog WN, NHL Whats Next, PC Blog WN, PC Whats Next, PEN Blog, SC Blog WN, SC Whats Next, Waldenstrom Blog WN /by Dana Brown

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Self-care is essential for all of us; it’s something that allows you to take a mental health break while also making sure your body is in good shape. After a period of stress or anxiety, you need a little time to heal and get yourself back to a good place. This is especially true for cancer survivors, who battle stress, physical pain, anxiety, depression, and worry every day. Cancer comes in many different forms and affects the body and mind in different ways, meaning no two people will handle it the same way. What works for you when it comes to coping may not work for someone else, and vice versa.

Fortunately, there are many different ways you can learn to cope with your feelings and take a time-out. From daily exercise to learning to listen to your body’s cues, self-care involves a variety of activities for you to choose from. You may choose to practice self-care alone or with a close friend; you can do it from the comfort of your own home or at the gym. Whatever makes you feel good in a healthy way is classified as self-care.

Keep reading for some great tips on how to practice self-care as a cancer survivor.

Take Your Medication as Directed

Most cancer survivors need medication to help with pain, nausea, and other symptoms that will make daily life a little easier. Some take several different medications every day, and it’s imperative to keep track of these and make sure you’re taking them correctly. You might use an app on your phone to help you remember what time you need to take specific pills, or invest in a sorter that will keep all your medicines measured out for each day.

If you feel that the dosage on a medication isn’t right, talk to your doctor immediately rather than attempting to change the dosage yourself or discontinuing use. Because many of these can be habit-forming, using them correctly is important not just in maintaining your health, but because opioids can be highly addictive and can cause many more issues than they treat if used incorrectly.

If you’re concerned about using prescription medication like opioids to treat your pain and nausea, it’s worth talking to your doctor about the option of CBD. It’s a natural, non-narcotic and non-hallucinogenic treatment that provides relief for many of cancer’s most troubling side effects, such as muscle pain, nausea and anxiety. As with any treatment, be sure to consult your physician before giving it a try.

Eat Well

Sometimes, medication or chemotherapy can interfere with appetite, making it extra important to make sure you’re eating well when you are hungry. Try to eat small snacks throughout the day made up of whole, unprocessed foods, and remember to stay hydrated. Talk to your doctor about the best foods for your body’s needs, and consider hitting up the farmers market for fresh produce as often as you can.

Make Your Needs a Priority

Many individuals who are faced with a battle against cancer find that they are so focused on the people around them that they rarely take time out for their own needs. You may be worried about how your family will pay for treatment or how your illness is affecting your children. While these are valid concerns, one of the best ways to help ease your mind is to take a little time for yourself. Go for a short hike, sit down with a good book, or lie in bed and listen to your favorite music. Learning how to slow down and reset your mind isn’t always easy, but it’s necessary.

Try Something New

As long as you have the energy for it, now is the perfect time to try something new. Finding something that is enjoyable and allows you to shake off worry or anxiety for a while is a great way to take care of yourself. Whether you want to learn a new language or travel to a place you’ve never been, don’t put it off. Just make sure your health won’t be affected negatively, and talk to your doctor before making any major plans.

Taking care of yourself can be a big job, so remember that there are only so many things you can do in a day. You might try yoga and meditation during this time to learn how to practice mindfulness and focus on the present; this can help you cope with stress in the moment so that you can turn your mind to more important things.

Dana Brown

Dana is the creator of HealthConditions.info, which aims to provide Internet users with helpful content and resources that will lead them to making healthier decisions.

healthconditions.info/

Returning To Work After Cancer Treatment. Part 1: Preparing the Ground

November 26, 2018/in AML Blog WN, AML What's Next, Bladder Cancer, Bladder Cancer What's Next, BLC Blog WN, CLL Blog WN, CLL What's Next, FL Blog WN, LC Blog WN, LC Whats Next, Marie Ennis-O'Connor, MM Whats Next, MPN Blog WN, MPN Whats Next, NHL Blog WN, NHL Whats Next, PC Blog WN, PC Whats Next, PEN Blog, SC Blog WN, SC Whats Next, Waldenstrom Blog WN /by Marie Ennis-O'Connor

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This month’s article is the first in a three-part series which deals with common concerns on returning to work after a cancer diagnosis and offers practical solutions for helping with your re-entry into the workplace.

A diagnosis of cancer is a profound disruption in our lives, leaving no area untouched. Cancer impacts our family life, our relationships, and our careers. If you have been absent from work, the decision to return often brings with it mixed emotions. While you may welcome a return to normality, a steady income, the company of work colleagues and a sense of identity, you may also be feeling apprehensive about how you will cope.

Particularly if you are used to identifying closely with your job, a prolonged absence from work can be difficult. Even if you continue working during treatment, you may also experience some difficulties. You may be wondering how you will cope with your workload. Will your co-workers treat you differently? How will your boss react to you? Will your promotional opportunities be affected?

Although the majority of those who return (or continue) to work after cancer adapt well, some will encounter difficulties. In Part 1 of this series, we will take a look at some practical ways to prepare for your re-integration back into the workplace.

When Do You Know It Is Time To Return To Work?

There is no one-size fits all answer to the question of when it’s time to return to work. It will depend on the type of treatment you received, your financial situation, your physical and emotional state and other personal factors.

Only you know whether it would be better for your psychological health to be at home, away from any professional stresses, or at work, where distractions may take your mind off other things. Chris Lewis, founder of Chris’s Cancer Community, believes that “work can be a fantastic therapy, when dealing with life’s challenges. We feel valued, and of course, can provide an income for our family.”

On the other hand, perhaps you see cancer as an opportunity to re-evaluate your career. You may find that your work priorities have changed, or you feel unable to keep up with the demands of your previous work pace. Perhaps you want a new job which will allow you more flexibility to pursue other goals or you may want to explore working in a field which is more personally fulfilling (we will look at this in more detail in Part 3).

Preparing the Ground

Doing some groundwork before you return to work should help make re-entry more manageable. Plan in advance how you will respond to questions from co-workers, deal with your boss’s expectations, and handle your workload. Here are some tips to help you.

1. Making adjustments and accommodations to your work environment

Your employer has a duty to make ‘reasonable adjustments’ to your workplace and working practices. What is considered a ‘reasonable adjustment’ depends on factors such as the cost and practicality of making the adjustment, which is why it’s important to discuss things as soon as possible with your employer. Some things to discuss include the possibility (at least temporarily) of a phased or gradual return to work, job-sharing, working from home or flexi –time.

A word of caution here. It is not unusual for part-time work to turn into a full time job. Set clear boundaries about what is achievable in the hours you have agreed to work. If you are thinking about working from home, be aware that this can be quite isolating. Will you miss the camaraderie of the office?

Breast cancer blogger @lifeafterlola suggests that “A phased return is good, combining time back at work with work from home or a day off on, say, a Wednesday to break up the fatigue. The hardest thing to cope with,” she says, is getting back up to pace with early mornings, late finishes and travel on top of work and social adjustment.” Julia, co-founder of breast cancer Twitter chat, #BCCWW offers a practical tip to reduce the stress of traveling to work. “If it’s possible travel outside rush hour,” she advises.

Next, think about your physical environment at work. Revisit you work-station. Does it need to be redesigned or fitted with equipment such as back support or other devices to make you more comfortable?

The size of your company may affect how much accommodation to your needs you can expect to get. Larger organizations are in a better position to offer you more flexibility and support, but most employers will be understanding if you communicate your needs clearly with them. It may be helpful to have a letter from your doctor to document any accommodations required.

2. Getting up to speed with changes at work

Depending on how long you have been absent, you may find things have moved on since you were away from work. If this is the case, take some time to get up to speed with new systems and developments. This may include attending formal training sessions in advance of getting back to work, or having a colleague take some time to get you caught up again. Julia explains how she struggled initially with her job which “involved reading lots of draft legislation, policy papers, etc.” and after speaking to her boss, did some refresher training to get up to speed again.

3. Updating your co-workers on your plans to return to work

Most of us have built up a carefully constructed professional persona and we work hard at protecting it by keeping a fairly strict line of demarcation between our personal and professional lives. It can be unsettling to find these lines have become blurred by your illness.

Not everyone knows the right thing to say or how best to offer support. Connecting with colleagues before you return to work can, in the words of Julia, “get a little of the first day nerves out of the way, especially if you are feeling anxious about their reactions to your changed appearance.”

In general people will take their cue from you, so take the lead with colleagues. Talk them on the phone, send an email or arrange to meet for coffee or lunch. Reassure them that you are doing ok and that you still want to be a valued member of the team. Decide in advance how much you are comfortable sharing. If you are a naturally open person, then you can talk frankly with your work colleagues, letting them know what they can do to help you ease back into work. If you are more private, just tell everyone that you appreciate their asking, you are doing ok now and you are looking forward to getting back to normal.

4. Communicating with your manager

Most managers and bosses will support your transition back to work, but they may be unsure of how best to handle this. As Kate Bowles points out in this post: “The particular challenge of having oncology patients (which is what we still are) as staff under your management, as colleagues and as workplace friends, leaves everyone falling back on adhoc interpersonal skills.”

It can be difficult for managers and colleagues to know how to strike the right balance between giving you extra support and allowing you to carry on as normal. As Julia points out “Your line manager isn’t a mind reader. Be honest about what you can/can’t do, offer solutions, about managing work and don’t just leave it to them. It should be a two way process.”

For your part, you may have concerns about being perceived as a productive member of the team. Open and honest communication is key here. Check in regularly with updates on how you are coping and to review your productivity. If there are things that you are not ready to undertake initially, then be honest, and ask for help if you need it. Set clear boundaries that will allow you to say no to certain types of requests, such as staying late for non-essential projects. “Learn to say I can’t ….YET,” advises Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening.

A note on work discrimination. Legally, your cancer history can’t be used against you in the workplace. But it can be difficult to determine this, because discrimination can be subtle. Know your rights. Look into whether you are protected by the federal Americans with Disabilities Act or your state’s Fair Employment Law.

5. Book a counseling session

If you are worried about how you will cope on your return to work, consider booking some sessions with a counsellor or cognitive behavioral therapist to build up your confidence and coping skills. Some employers have an employee assistance program in place which allows you to speak in confidence to a trained professional about your concerns. Ask if this is available in your company.

Learning some stress management techniques in advance of your return will also help you cope better (we’ll look at this in more detail in Part 2).

6. Stock your freezer

When we’re tired, we tend to gravitate towards processed food which depletes our energy reserves further. Siobhan suggests you “stock up handy home cooked freezer meals in advance of returning to work to avoid being tempted to skip dinner when over-tired.”

The key to managing the stress of working after a cancer diagnosis is to prepare as much in advance of your return to the work place. Be prepared to be flexible in your planning approach. Cancer recovery is an ongoing process. There will be many ups and downs. You may have to deal with late side-effects of treatment or side-effects related to medication. Be ready to adjust your work practices if and when you need to.

Next month, I will share more tips and practical advice on handling your work load, managing your time and dealing with issues such as fatigue and concentration once you return to work. Until then, if you have any tips to share with readers about how you prepared your own return to work, please share them in the comments below.

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

Grief, Loss, and the Cancer Experience

March 27, 2018/in AML Blog WN, AML What's Next, CLL Blog WN, CLL What's Next, FL Blog WN, LC Blog WN, LC Whats Next, Marie Ennis-O'Connor, MM Blog WN, MM Whats Next, MPN Blog WN, MPN Whats Next, NHL Blog WN, NHL Whats Next, PC Blog WN, PC Whats Next, PEN Blog, SC Blog WN, SC Whats Next, Waldenstrom Blog WN /by Marie Ennis-O'Connor

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“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging. Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness. While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life.

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings. Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body? You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud. Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through. Grieving is not something that occurs once and then you are ok. Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again. The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day? Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through. Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style. Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel. Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense. If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression. If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows. It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time. We may be radically changed by the experience, but we find a way to continue to face the future.

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

Health Tips To Support A Senior Through Cancer Recovery

March 13, 2018/in AML Blog WN, AML What's Next, CLL Blog WN, CLL What's Next, FL Blog WN, LC Blog WN, LC Whats Next, MM Blog WN, MM Whats Next, MPN Blog WN, MPN Whats Next, NHL Blog WN, NHL Whats Next, PC Blog WN, PC Whats Next, PEN Blog, SC Blog WN, SC Whats Next, Uncategorized, Waldenstrom Blog WN /by PEN Editorial Staff

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Cancer can happen at any age, but it’s most common in the elderly. The American Cancer Society explains 87% of all cancer cases in the United States are diagnosed in people 50 years old and over. Cancer in older age brings with it many unique problems, including, pain, depression, loss of strength and fitness, cognitive decline, and dementia. If you’re caring for an elderly cancer patient, it’s important you coordinate with their cancer team. Recovery plans focus on physical, social, and emotional health to give senior cancer patients the best quality of life possible.

Prepare healthy food

It’s never too late for anyone to start eating healthy. It’s important you give the elderly person you’re caring for enough nutrients from a variety of fruits, vegetables, dairy, pulses, and grains. Red and processed meat should be limited, or preferably avoided altogether. You should also check with their doctor whether they have any special dietary requirements.

Cancer patients often have reduced appetite. The key is to give them calorie-dense food — soups, smoothies, and stews, for example. It’s also important to set routine family meal times. Socializing is an important part of recovery.

Protect their safety

An elderly cancer patient is in a vulnerable position. Do your best to make sure they’re safe around the home before they return from the hospital. Install night lights in the hallways and bedrooms. Ensure carpet is securely fixed in place and remove loose rugs to prevent falls. They may need help with everyday tasks, such as, bathing, dressing, moving around, and going to the toilet.

Encourage exercise

Unfortunately, cancer treatment takes its toll on the body and mind. It often leaves patients fatigued, which is a feeling that can often strike without warning. Nonetheless, a gentle yet regular amount of physical exercise is highly beneficial seniors. Not only does it boost their mood, but it also helps improve mobility, strength, flexibility, and balance.

Give emotional support

Cancer treatment is stressful, but talking about it can help. While it’s up to the senior you’re caring for how much they open up, let them know you’re there for them if they want to talk. They may also be interested in joining a support group for practical advice.

Ultimately, it’s important your senior has a social and emotional outlet to support them and make them feel less alone. If you ever have any problems or concerns, let their cancer team know. You’ll be given as much help and support as you need.

About the Author: Chrissy Rose is a Content Manager and is working to build one of the best senior resource sites.

Surviving Melanoma

May 24, 2017/in Patient Stories, PEN Blog, SC Blog WN, SC Whats Next, Treatment Diaries /by Kara Rayburn

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I discovered my Melanoma 14 years ago in a hotel mirror. It was at a Courtyard by Marriott where the closet doors were mirrored behind the vanity. I was getting ready for a day filled with important meetings and my back was readily visible in the reflection of the mirror. It was a black pin sized marking. So, small but so obvious. I made a mental note to deal with it when I returned from travel, but one day bled into the next and I never made it a priority. I didn’t think much of it, only that it was black in color and something I had not noticed before.

It was several months later as I sat on the beach enjoingy the warm sun (how ironic since it almost killed me) when a friend mentioned it to me. She thought I really needed to get it checked out. She said it was really black and concerning…. mental note #2 in the books. Vacation ended and we headed home. I made a few calls and since I had never been to a dermatologist I felt it was a daunting task. I was embarrassed to admit my concern and lack of knowledge…I mean really…it’s just a dark freckle.

But it wasn’t! Turned out to be a serious case of melanoma – stage 2. I googled it and it scared me even more. Was I seriously going to die from this pen mark size of a mole? It seemed impossible. Denial was my first defense and only strategy. I had pre-op, counseling, operations and treatment and many, many sleepless nights, I’ll be sure to share even more in my future diaries – this is just the cliff notes. So many emotions to share and victories to celebrate. I think this will be a learning place. A place to support and to be inspired.

Yesterday, I found myself in a similar setting (a Courtyard as a matter of fact) and it reminded me of my experience. It was a bit unnerving and while I am thankful to be here to talk about it today – I was filled with uncontrollable anxiety as I witnessed the view of my back…afraid I might see something new. Something so simple yet so impactful.

We live to tell! Sharing my story is therapeutic and my feelings are real. All of you who read my tale and scribble in my diary make my fears more tolerable and I appreciate each and every one of you every day!

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

It’s NOT Just Skin Cancer…

May 17, 2017/in Patient Stories, PEN Blog, SC Blog WN, SC Whats Next, Treatment Diaries /by Kara Rayburn

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Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

I’m new to Treatment Diaries and since this is my diary, I want to share some thoughts that are now near and dear to my personal experience with this dreadful condition. Let me start with what I’ve heard more times than I can count over the past decade and most often when sharing my Melanoma diagnosis with those who are uninformed. It goes something like this – “What kind of cancer did you have?” My response, “I was diagnosed with stage III Melanoma.” The exchange – “Oh I think I’ve heard of that, it’s just skin cancer…right?” In fact, I’ve had people tell me I was lucky to just have skin cancer. Quite possibly the one thing you should consider never saying to someone with Melanoma. Not only is it completely untrue it will do nothing to make the individual with the diagnosis feel any better about their situation. The truth is, Melanoma is one of the deadliest forms of skin cancer. It’s not just skin cancer.

So now that we are clear on it’s not just skin cancer, a few things I wish I would have known:

Research suggests that approximately 90% of melanoma cases can be linked to exposure to ultraviolet (UV) rays from natural or artificial sources, such as sunlight and indoor tanning beds.
However, since melanoma can occur in all melanocytes throughout the body, even those that are never exposed to the sun, UV light cannot be solely responsible for a diagnosis, especially mucosal and ocular melanoma cases.
Current research points to a combination of family history, genetics and environmental factors that are also to blame.
You can read this Melanoma Fact Sheet for more information!
Support for melanoma patients is incredibly important and connecting with those who relate brings much needed encouragement along with valuable insight.

Unlike other cancers, melanoma can often be seen on the skin, making it easier to detect in its early stages. Keeping track of the changes to your skin and seeing a dermatologist on an annual basis can be a lifesaving event. If left undetected, however, melanoma can spread to distant sites or distant organs. Once melanoma has spread to other parts of the body (known as stage IV), it is referred to as metastatic, and is very difficult to treat. In its later stages, melanoma most commonly spreads to the liver, lungs, bones and brain; at this point, the prognosis is very poor. Again…it’s not just skin cancer.

Skin cancer comes in many forms and for numerous reasons. Your job is to protect your skin. Our skin is the biggest most vital organ we have to care for. We can’t live without it nor can it be replaced. It’s ours for as long as we live so we need to take the vitality of it seriously. Stay out of the sun, look for changes and recurring issues to your skin even in areas that never see the sun, see a dermatologist on a regular basis and make sure to wear sunscreen all year around. It’s not just skin cancer especially when it can kill you. It’s a serious topic and I feel so very fortunate to be able to share my personal experience. I hope to be a help to others newly diagnosed and an inspiration to those on the journey. Let’s kick melanoma to the curb together…

A Compromised Immune System…Myeloma & Me

March 29, 2017/in Patient Stories, PEN Blog, SC Blog WN, SC Whats Next, Treatment Diaries /by PEN Editorial Staff

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My year is off to a rocky start – Myeloma is wreaking havoc on my body and doing a number on my ever-weakening immune system. New Year’s Eve I went to the emergency room…. they ran tests and sent me home. A few weeks ago, I went to the ER again as I have been puking nonstop, unable to hold down anything even those that go straight into my intestines via my GI tube. I was so dizzy I couldn’t handle it anymore. I figured they would do the normal treat and release but they didn’t. I spent 48 hours in the ER till they found me a room, my primary care physician came in and said, “I’m getting you out of here cause it’s most likely just an ear infection.” Well that two days ended up being seven days and many doctors were called in, including a few of my previous specialists. He then called my oncologist who said yes, we will resume care just get her here. I then was at that hospital another seven days. They changed my formula after withholding some of my meds that entire time. Two weeks without Lasix and they wondered why my potassium bottomed out. Nothing makes sense about the time there but with my new feeds I’m doing well on.

So, I’ve been home a week now. My labs they drew Monday were normal. Potassium was 2.7 at the hospital and are 8.2 now. I had restarted my Lasix on Saturday before the labs were drawn. Of course, now I’m dealing with severe swelling. When I was weighed at the hospital I dropped from 204 to 130! No one is happy about the weight loss and I’m questioning if I need the Lasix, is it causing me to swell? So, I have an emergency cardiology appointment this week. I will also see my oncologist this week.

I’m also wondering if I have a blood clot as when I was in the hospital I started having numbness from the ankles to my feeding tube area! So much going on ….and yes, I’m scared. My grandfather died from a clot going into his lung unnoticed by hospital personnel back in the 80s, I’ve told my care team about this and about the numbness and no one is taking me seriously. They called the doctor on record who did nothing either. Now my father found out he has clot issues in his legs (not his dad who had that clot but my moms, my father had to have surgical intervention to ease his).

All of this on top of dealing with cancer – too much for one person to deal with. But no matter how poorly I feel and how worried I am for the future, I am reminded to advocate for myself and then others if I’m able to. I sometimes have a hard time remembering that myself…It’s going to be a long week

Presentation Tips for Patient Advocates: Developing Effective Speaking Skills

January 30, 2017/in AML Blog WN, AML What's Next, Care Partner Resources Blog, CLL Blog WN, CLL What's Next, FL Blog WN, General Blog WN, General What's Next, LC Blog WN, LC Whats Next, Marie Ennis-O'Connor, MM Blog WN, MM Whats Next, MPN Blog WN, MPN Whats Next, NHL Blog WN, NHL Whats Next, PC Blog WN, PC Whats Next, PEN Blog, SC Blog WN, SC Whats Next, Waldenstrom Blog WN /by Marie Ennis-O'Connor

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As a patient advocate you may be invited to speak in public about your cause, and while some of you will relish this opportunity, many others will find it daunting. According to the National Institute of Mental Health, 74% of people suffer from speech anxiety. Surveys show that the fear of public speaking ranks as one of the most common phobias among humans. There’s even a name for it – glossophobia – the fear of public speaking. Whether you are daunted or excited by the prospect of speaking in public it pays to have a plan in place to communicate effectively. For a presentation to impact an audience and be memorable, you must structure the content, design the slides, and use public speaking techniques effectively. Next time you are asked to deliver a presentation, follow this step-by-step guide designed to help you become a more confident, prepared, and persuasive speaker.

STEP ONE: PREPARE YOUR TALK

Good presentation skills begin with thorough preparation. Here are seven tips to help you prepare for your next talk.

1. Decide what you want to say. What is the purpose of this talk? What do you want your audience to know, feel, or do after they have heard you speak? Your presentation should have a purpose, something that the audience walks away eager to do. Write down your core message in one or two clear sentences. Include a call-to-action (CTA) detailing exactly what should happen next. If you find that you have several messages you would like to deliver, challenge yourself to focus and simplify your message. Once you have a clear focus for your talk, you can then group your other ideas around it.

2. Know your audience. Who will be coming to your talk? Why are they coming to listen to you? What do they already know about the topic you will be speaking on? Find out as much as you can about your audience so you can better speak to their interests and in the language they are most familiar with.

3. Do your research. Do you want to present facts and figures in your talk? Are there any research studies you could incorporate to make your core message stronger? Use online tools like Symplur, the Journal of Internet Research (JMIR), and Google Scholar to help you with your research.

4. Structure your presentation. Now it’s time to put your key messages and research points together in a structured way. Having a structure is a helpful roadmap to keep you on track and to allow the audience to follow along with your points. Start with astrong opening, for instance, share some compelling statistics, outline a current problem, or share a memorable anecdote. If you feel comfortable sharing a personal story, this is one of the most effective ways to get your audience to pay attention. Stories leave a lasting impression on listeners. Patient advocate Martine Walmsley points to the importance of sharing your patient story because the story “behind the diagnosis is a side researchers and clinicians don’t usually see. Don’t assume they already know those details.” (Read Why Your Patient Story Matters for more tips on how to tell your patient story). Healthcare consumer representative and patient experience consultant Liat Watson advises patients to speak from the heart. “People want to connect with you and your story”, she says, “Share like you are sitting around the kitchen table”.

Next, organize your main points into an order that will make sense to your listeners. Reflect on your key points and how you might emphasise them. Finally, determine the take-home lesson (CTA) you want to close with and how you will convey this to your audience. Your CTA should transmit a sense of urgency. Why is it important they hear your message and act now? What will happen if they don’t act?

5. Add visual interest. If you decide to use slides in your presentation aim to create highly-visual slides with minimal text. Never cram information onto your slides. Instead, present one idea per slide so the audience can process each point fully before being presented with another idea. By presenting only one point at a time the information is easier to understand, and the audience is less likely to experience information overload. Avoid excessive use of bullet points, not only do they contribute to the phenomenon known as Death by PowerPoint, but they are also proven to be an ineffective method of communication for presentations. Take care when choosing fonts for your presentation– how you present your text is an important factor in making your slides clear and compelling. Type Genius is a useful tool to help you find the perfect font type and which fonts complement each other.

For a change from the usual PowerPoint presentation, consider using an alternative such as Keynote (for Mac) Prezi or Haiku Deck. Whichever tool you decide on, your slides should be visually engaging. Make good use of diagrams and charts and find some compelling images to hold your audience’s attention. When choosing an image make sure it is high resolution so that it will still look pleasing to the eye when it is blown up to full-screen proportions. Don’t be tempted to use an image you have sourced from a Google search unless the image is licensed “Creative Commons”. Instead look for images on sites such as Foter, Pixabay, and Unsplash, all of which gives you access to a bank of high resolution free-to-use photos. As a general rule of thumb, stick to one image per slide – anything more than that simply looks too cluttered. If you want to add text to a background image, choose a background with plenty of “whitespace” which will allow the text to be read clearly. If your image is lacking whitespace, try applying a blur effect or a gradient fill when you want to add text to your background.

6. Stand and deliver. Rehearse out loud using whatever slides, notes, or props you plan to use during your talk. Don’t simply practise by sitting at your desk clicking through your slide-deck; stand and deliver your talk as if you are doing it in front of an audience. Work on your voice intonation and emphasis, flow and transitions, and practise controlling filler words, like “ems” and “ahs” (Toastmasters Internationalpoints out too many fillers can distract your audience). Crohn’s disease patient, Nigel Horwood, who has spoken to a large audience of nurses at Kings College Hospital, London, UK, recommends reading your talk out loud when you are practising. “I find that simply reading through what I have written doesn’t pick up the likes of over used words or even ones that are missing. Much better to hear it being read,” he has written in his blog Wrestling the Octopus.

Modulate your speaking voice to a lower pitch (if you can do so without sounding unnatural); the deeper the pitch of your voice, the more persuasive
and confident you sound. In “The 5 P’s of Powerful Speaking for a Memorable Speech”, professional speaker Pam Warren points out that “in public speaking clarity and tone are far more important than volume in that they imply authority, a certain gravitas and above all, confidence.” When speaking on certain points you may want to stress their importance, so practise the power of the pause – a slight pause before you’re about to say something important. Take a printed copy of your text and make marks, such as a forward slash (/) or use color coding in your paragraphs to remind you to pause at key points in your talk.

The most important thing you should practise is the opening of your talk. Focus on conveying a strong, confident start which will set the stage for everything that follows. Time your presentation using a stopwatch, or one of the many free countdown timers available online. After practicing a few times on your own, ask a friend to listen to you. If you don’t want to do this, video or audio record your presentation so you can play it back and see how you might improve on delivery.

7. Final preparations. Make sure you have a good night’s sleep the night before your talk and have your clothes freshly pressed and ready on hangars. Back up your presentation to a flash drive (or the cloud), pack a plentiful supply of business cards and handouts (if you are using them). Health consumer advocate Melissa Cadzow recommends making it easy for people to follow up with you after your talk, by having a dedicated business card for your patient advocacy work. She also recommends including information on your LinkedIn and Twitter profiles and providing an email address in your presentation slides.

STEP TWO: DELIVER YOUR TALK

It’s the day of your big presentation. Plan to arrive early so you can familiarise yourself with the room, meet the technical team, check your slides are working correctly, and practice using the microphone.

When you take to the stage, resist the urge to begin speaking straight away. Take a few moments to ground yourself – set your feet slightly apart, toes pointing towards the centre back of the room (this gives you balance and is the most secure and comfortable way to stand when talking). Pull your shoulders back and down – this allows your chest to expand, so you have more breath when you begin to speak. Make eye contact and smile at your audience which will help to relax you if you are feeling nervous.
When you begin to speak, do so slowly and clearly to give your audience time to absorb your words. Remember to take full breaths between sentences.

Dealing with presentation nerves: Feeling anxious or being nervous before a big presentation is normal. If you feel nervous, focus on the fact that your audience wants you to succeed. They are on your side. You were chosen to speak and you are the expert they have come to hear. There’s no need to tell them that you are feeling nervous – people probably won’t even notice if you don’t mention it. Whenever you feel those first signs of nerves such as a racing heart, sweaty palms and shallow breathing, bring awareness to the physical sensations, take some deep breaths and anchor yourself by touching something physical, such as a table or the slide advancer, or push your weight into your toes and feet. It’s perfectly natural to feel nervous, but try to focus your attention away from your nervousness and concentrate instead on what you want to say to your audience. Recognize that nerves are a signal that this is something that matters to you. Turn your nerves into enthusiasm and passion for your topic.

STEP THREE: AFTER YOUR TALK

Spend time after the presentation to reflect on how things went. Ask yourself (or others) what you thought went well and what could have been better? Take some notes on which techniques worked to help calm your nerves, which stories resonated with the audience, and how you answered any questions in the Q&A. The purpose of this exercise is to become a better presenter the next time you are asked to give a talk, by putting the lessons you learn each time into practice. Take every opportunity you can to practise speaking in public. Not only is it an important way to get your message out into the world, but mastering the art of public speaking is a wonderful way to boost your personal and professional confidence.

Editor’s Note: For another creative presentation design tool, please check out Canva.

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

Metastatic Melanoma Patient Diary Entry

August 6, 2015/in Partners, SC Blog WN, SC Whats Next, Treatment Diaries /by PEN Editorial Staff

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Diary Entry – Patient With Male Breast Cancer and Melanoma

I’m 72 and have lived most of my life in the Midwest, particularly Michigan, with forays to East Coast and West (New York, California) and two years in Sao Paulo, Brazil with lots of visits afterwards. Profession has been education on middle, high school and college levels as teacher and administrator. I decided when informed of my most recent illness to finally retire from university teaching in a grad teacher education program.

My first cancer was male breast. One of about 1400 a year in the U.S. Stage 2, no recurrence since diagnosis in 2003. Never worried about it returning. Second was metastatic melanoma, Stage IV, this year. Total surprise. I skipped Stages I-III with an unknown primary. Landed in my lung. All removed with a lobectomy (rhymes with my previous lumpectomy). I am now NED to hear this week after PET scan and brain MRI whether that continues to be true. I’m in the watch and wait category for further treatment–probably surgery first, then ipi*.

I don’t know how I am going to do with the program of 3 month scans. I do know I will have to live my life in 3 month chunks, but, of course, do not know how that will work psychologically. I have a very supportive wife, but she worries, too, of course.

April 2013

Had my surgery last Tuesday, back home late Thursday. Watching a good deal of snow out the window. I don’t mind at all not being out driving in it. It’s nice to be snug. We’re a snow belt city, one of the top fifteen or so in the country for total snow fall. I’ll have to look that up. Average winter just about 70 inches. I got into snowshoeing a couple of years ago at a buddy’s place in Sun Valley. Can’t make the reunion of the crowd this year.

Recovery is coming along. No exercise for another week. Then back in the pool, I hope. Can’t even walk around the block (not today, of course). Tomorrow I can drive.

“I’m feeling more and more optimistic about the melanoma. I think that’s better than looking around the corner. I have a lot going for me right now, and I’m convinced the ipi is working. Just not sure how well. I heard a doctor on a webinar yesterday say that those for whom ipi really works are like people who win the lottery. Why me? But it is you, and you’re done with melanoma for life. I’d like to be one of those 15%. I’d rather be that person than win the real lottery, no matter how big the payoff.”

As of August 2015 – Still thriving!

*”Ipi” refers to ipilimumab, a new monoclonal antibody drug that is being used currently in numerous melanoma clinical trials. Ask your medical team about these trials, or you can browse trials by using various trial finders such as the ones on cancer.gov or Melanoma Research Foundation.

Read more about patients and their experiences with clinical trials at www.TreatmentDiaries.com. Real people, actual stories, shared in private so you can be more social about your health.

Success is Being a Survivor

November 21, 2014/in AML Blog WN, AML What's Next, CLL Blog WN, CLL What's Next, FL Blog WN, LC Blog WN, LC Whats Next, MM Blog WN, MM Whats Next, MPN Blog WN, MPN Whats Next, NHL Blog WN, NHL Whats Next, PC Blog WN, PC Whats Next, PEN Blog, SC Blog WN, SC Whats Next, Waldenstrom Blog WN, Women Patient Stories /by Jodie Guerrero

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Success means so much – its definition is reflective of the heart & soul of the perceived successor. To me – Success is not just about chasing a dream and securing it – true success is a lot deeper than pushing through a physical barrier to win the prize on the other side.

I believe true success is flying in the face of danger, marching towards the fire and leaning towards the negative perception that your efforts will reap nothing or your existence is un-important.

Success is proving that your hunch was right, your dream was correct and your gamble paid off – NOT because you put in resources to get back (something for yourself). But, rather you gave your all for the good of others, for the delivery of kindness, for love in the form of understanding and ultimately sacrificial leadership for the fulfilment of a need in your community. Success can take many years and in most cases it does. It’s a gradual slope of hard work and its rewards are up there – on top of the mountain.

Why do I believe this? I am a survivor of cancer x 3, medical negligence, a disability as a result and currently 77 doses of cancer treatments to keep me alive and very soon a bone marrow transplant. I’ve seen people lose their fight, right in front of me. I’ve heard people tell me to be quiet and stop fighting for the suffering of others. Success is being a survivor and that’s what I am!!

What do we need to be a survivor? What do you need to be a survivor? A very important element for me has been faith and foundation. My faith is everything and the family who love me, combined with my faith are my foundation. Without a strong foundation – we may topple and fall, either mentally or emotionally. However, many people find other elements of underpinning to keep them strong, through the largest hurricanes of life.

Even with these ropes of strength in our greatest storms, we may still topple – however a secure footing will help us find it easier to rebuild again and seek help when we need it. This may include a shoulder to cry on, someone to take us to medical appointments/assist with medication or someone to call a Psychiatrist. There is nothing wrong with asking for help, I believe it proves our strength and resolve.

Being a survivor takes a strong desire to continue no matter what, a resolve to not listen to the masses or those who do not support you – this may include family and friends. Believe it or not, when we have a difficult health journey, people walk away – even folk who should not or those we thought we could rely on. Some of us often discern these individuals, as they run for the hills and never return, yes – even those who are related to us.

We may not understand this behaviour at the time, but often the ones that run cannot cope with our journey (even if it’s a long-term success) and in the end, we may find that these relationships weren’t contributing to our health anyway. For myself personally – of course, there are days when physically I find my daily duties difficult to fulfil – these days, I discipline myself to know & practice when I need a little extra medication/a little extra rest and a little extra prayer, these things are what survival currently look like for me.

After my Bone Marrow Transplant, I will have less cancer pain and more resolve to survive in a different manner – I will continue forward and enjoy each day blessed and given to me. I will enjoy every day granted to me with the family and friends who love me and the ones that have stuck around – they are the ones we are surviving for. They are the people who value our survival – we may not realise how many people around us cherish our life and the energy we put into surviving, however, I know most of us have a good handful and many more supporters after that.

Treasure the people who cling to you and love your survival – you are worth more than all the gold and jewels, on our beautiful planet – your life and the days you have are more significant than you could ever know – just ask the people who love you.

Thank you for reading, please feel free to contact Jodie at the following email address: Jodie@jodiesjourney.com

Advanced Care Planning – What to Do Now!

June 28, 2014/in AML Blog WN, AML What's Next, CLL Blog WN, CLL What's Next, FL Blog WN, LC Blog WN, LC Whats Next, MM Blog WN, MM Whats Next, MPN Blog WN, MPN Whats Next, NHL Blog WN, NHL Whats Next, PC Blog WN, PC Whats Next, PEN Blog, SC Blog WN, SC Whats Next, Waldenstrom Blog WN /by PEN Editorial Staff